Media and Research Digest (009)

Friday 24th August 2018
Welcome to the Ninth Emerge Australia Media and Research Digest!

The fortnightly summary of media and research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

1 – Visual reading impairment may be a symptom of ME/CFS
Authors: Wilson, R., Paterson, K., McGowan, V. & Hutchinson, C.

A small study done at the University of Leicester and published in Frontiers in Psychology has revealed that vision-related reading difficulty may be a measurable symptom for ME/CFS.

27 ME/CFS patients were matched with corresponding controls and tests found that ME/CFS patients overall had slower maximum reading speeds and poor visual acuity.

2  – CDC revises its information on ME/CFS
Link 1:

Link 2:

On July 12 2018, the Centre for Disease Control (CDC) in the US updated their guidelines for ME/CFS. The update has received mixed responses.

#MEAction has conducted an in-depth analysis of the changes.

The Good:

The CDC website outlines exercise may be harmful with the quote “While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful to patients with ME/CFS.”
There is an emphasis on pacing and the guidelines note that treatment plans should be tailored to the individual and “it’s best to proceed slowly”. It also states that this process requires trial and error and requires that patients learn to listen to their bodies.
Emphasising that ME/CFS is a biological illness and isn’t psychiatric.
The report includes representation of mild, moderate and severe cases of ME/CFS stating that “if patients are severely affected or are having an exacerbation of their symptoms, even visiting a clinic for care might not be feasible at times. Thus, healthcare providers may not see patients when their symptoms are most severe.”
CDC acknowledges the lack of education for ME/CFS stating that “more education for doctors and nurses is urgently needed so they are prepared to provide timely diagnosis and appropriate care for patients.”

The Bad:

There are still passages which recommend exercise in order to avoid de-conditioning despite the fact that severe patients are unable to do so.
There are sections which state prognosis in a positive light as well as claims that early intervention helps recovery. These statements do not have adequate research support for inclusion.
The general practitioner is expected to develop a treatment plan and there is no specific mention of rheumatology, immunology, neurology and other specialists.
Milder cases are given as the norm; there are many severe ME/CFS patients who cannot conduct basic daily tasks and their situations are not represented adequately.
The article ends with a list of recommendations for the CDC website from #MEAction.

3 – Markers of non-coeliac wheat sensitivity in patients with ME/CFS
Authors: Uhde, M., Indart, A., Yu, X., Jang, S., De Giorgio, R., Green, P., … Alaedini, A.

Researchers from the Department of Medicine at Columbia University Medical Center in New York recently reported via a letter in the BMJ Journal Gut that Non-Coeliac Wheat Sensitivity (NCWS) is associated with “a state of systemic immune activation in conjunction with a compromised intestinal epithelium.”

Symptoms of NCWS include abdominal pain and bloating, fatigue, headache and cognitive difficulties. Since these symptoms are very common in ME/CFS, researchers conducted a study with 131 ME/CFS patients and 86 controls to gauge NCWS amongst ME/CFS patients.

Their results suggest that there may be a subset of ME/CFS patients where NCWS may partly contribute to their symptoms. These results provide relevance for further studies of food sensitivity amongst ME/CFS patients.

3 – Prize-winning animation released for severe ME/CFS day

M.E. is a short animation by Alexandra Hohner using interviews with ‘Olly’ who developed ME/CFS following a giardia infection. Hohner says “The experiment is based on the idea to create a simulation of Olly’s photophobia (sensitivity to light)”.

This is 3′ 9″ that we highly recommend.

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